Month: May 2010

Perfectly on cue, some incredible summer weather came for Memorial Day weekend. The cool weather hasn’t stopped the kids from swimming previously, but today was one of those perfect days to have a pool.

Rudy sat on the deck and was having fun watching Max. It wasn’t too long before he got splashed. A bit startling at first, but then it was kinda funny!

We’re counting down to the end of school so it seems that there’s some special event every day. Wilson had a band concert and got inducted into the Junior Honor Society. Olivia had two field trips and participated in the school lip sync. Max had a spring sing and a special class presentation this morning. Rudy is a trooper and goes along for the ride, even though he doesn’t like crowded rooms with lots of applause and cheering. That’s why he really liked Max’s presentation as it was in a room full of quiet and well-behaved kids.

Listening to Max's presentation

As Miss Grant and Max’s classmates have been following Rudy, they were particularly interested in Max’s reports about Rudy being able to speak with his new valve. So, Max promised them a little show and tell.

Max showing everyone the speaking valve

Rudy knows when the spotlight is on him so he happily gave them a show with a few really good squeals.

Max showing off his little buddy

The kids are counting down the days until the final school bell rings on June 3rd. We are so proud of them and are glad that Rudy has such caring and dedicated older siblings. He lights up when they come near him so we’re looking forward to a lot more of that with them home for the summer. We’re also so grateful for the special school community at La Patera and how they’ve taken interest in Rudy and surrounded our family on this journey.

We finally have blue skies and sunshine. It’s going to be a great weekend!

We had a special weekend with visiting family from Europe. Rolf’s cousin, Astrid, and her husband, Wolfgang, flew in from Munich late last week for a holiday in America and we enjoyed a weekend filled with fun showing them around Goleta and Santa Barbara. They were sweet to put up with the crazy goings-on in our household and even braved a trip to the local Drive-In with the big kids to watch the latest Shrek (isn’t it, like, Shrek 12 in 4D?) in a wicked wind storm!!! It was a precious time and so great for the “next generation” to have another opportunity to get acquainted with extended family from Europe. It was particularly sweet to introduce Astrid and Wolfgang to Rudy as they have been following Rudy’s Beat all this time from so far away. Astrid said they’ve been following Rudy’s journey closely eventhough they don’t understand all the medical terms, etc…so sweet. Well, there sure wasn’t any language-barrier for Rudy…he smiles in every language…

Some lovin' from cousin Astrid

Rolf and Rudy with Astrid und Wolfgang

In the midst of all the family fun, Rolf, Rudy and I made a quick visit to the Polo Club Saturday evening for the local American Heart Association Heart Ball. Rolf shared Rudy’s story at this annual fundraiser and we enjoyed an evening out. Thankfully, Rudy cooperated and slept through the dinner and woke up just in time to be introduced during Rolf’s presentation and only needed to be suctioned ONCE during the event! Rudy’s SB Cardiologist, Dr. Harake, was seated next to us and we had a fun chat that did not involve any talk of echos, heart caths or medication dosages! 🙂 I did, however, feel it was the safest place for Rudy as we were in a tent full of cardiologists…with three being at our table! Ha Ha It was an honor to be present and represent the countless heart families that would benefit from research resulting in new technology and advances in the field of cardiology. We’re certainly grateful for our little huddle of experts and their knowledge of the “latest and greatest”!

Dr. Harake and RudyAnother photo op with Dr. Harake

And now we start our last full week of school before summer vacation…the next 10 days will be focused on all the “end of the year” activities and special programs the kids have at both schools. We’ll resume Rudy’s schedule of dr. appointments when school is over starting with our monthly visit to Dr. Harake’s the first week of June…we’ll keep you posted!

I’ve mentioned before that I do internet rounds just about every morning to check on Rudy’s heart buddies. Even though this can evoke a heaviness, it’s just something I can’t avoid doing. On the other hand, there are mornings where it brings forth the good kind of tears, like when I read about Gabriella’s miraculous day yesterday. What a courageous girl; what dedicated parents; what incredible doctors!

Even among an unchosen path, there is richness one wouldn’t have found otherwise. The anguish and worry have a way of finding us–we better not let the moments of joy escape unnoticed.

Okay, so I’ve been trying to figure out how to get this slideshow I put together for Rudy’s dedication LAST JUNE on the blog and I finally figured it out this week!!!! It’s a collection of blog pics that consolidates Rudy’s hospital stay so, obviously, it’s a bit outdated now but it’s a sweet collection set to the main title song from the movie “Rudy”. I’m posting it mainly to have record of it on the blog but, if you have a minute, you might enjoy it.

My techie breakthrough occured while compiling a bunch of old Rudy pics for a slideshow presentation to be used next week at the American Heart Association Gala here in Santa Barbara. At Dr. Harake’s recommendation, the local AHA office asked us to attend and share a bit of Rudy’s story for this annual fundraiser. I’m including the information below in case you’re in the area and interested in attending the event at the Polo and Racquet Club. It should prove to be an inspiring evening.

The Twelfth Annual American Heart Association

Santa Barbara Heart Ball

-a sunset celebration with heart

Saturday, May 22, 2010

5:30pm – 10:30pm

Santa Barbara Polo & Racquet Club

3300 Via Real, Carpinteria CA

For ticket information, contact Stacie Irish, Business Development Director

‘Thought we’d share one more emerging skill for Rudy…we finally have possession of the speaking valve and Rudy is adjusting to it. The valve fits on Rudy’s trach and allows him to inhale through it but not exhale. As he exhales, the air is forced past his vocal cords and through his mouth allowing him to vocalize. He gets to wear it several times throughout the day for short periods of time as he gets used to the back pressure…here’s a couple of his first attempts:

I was spoiled this Mother’s Day…I received a lovely poem from Wilson, a pretty “I Love You Because” flower from Olivia, a cool abstract collage from Max and this from Rudy…

Yep, you saw it right! Rudy rolled over for the first time Sunday morning! This is something we’ve been working toward in his therapy and play at home for months so we were all very excited by this milestone accomplishment and Rudy seems pretty pleased with himself too! It’s an encouragement to see progress for sure. Rudy is making progress in all the areas tested by his therapy team but it is slow and sometimes hard to distinguish. Sunday’s milestone is a definite “roll in the right direction”! Interestingly, I had a meeting with the team from Regional Center on Monday to go over Rudy’s 18 month assessment and, for all you “therapy geeks” out there, his Approximate Age Equivalent in the various categories is as follows:

I’m encouraged…we’re not where I thought we’d be when we started his therapy a year ago but, then again, no one really knew what goals were realistic to set…I feel we’re still a bit clueless and naive about what can happen in the next 6-month assessment period but he’s progressing and that’s all that matters and Rudy’s new rolling trick sure beefs up the motivation to keep moving forward! 🙂

Things on the heart front remain stable. We had our monthy appointment with the SB cardiologist on Friday and nothing has changed which is good news for Rudy’s lungs. At the end of the echo, Dr. Harake said “Well, if we’re still on the same page, I recommend we continue to wait for the pulmonary hypertension drugs to do their work” to which I replied, “Of course…we’re just so anxious to see if they are making a difference” to which Dr. Harake replied, “We’re all anxious to find out”. I was comforted by his sincere, heartfelt reponse…I guess it reminded me that we’re not alone in this wait…that Rudy has a team of medical professionals asking similar questions and if it feels like we’re drifting out at sea sometimes, well, at least we have a network drifting along with us (kind of like our very own version of those AT&T network commercials – or is it Verizon?! Ha) So, we wait.

Many of you have been sweet to ask about my Dad and so I wanted to include a quick update and request for prayer as his latest MRI shows evidence that the cancer is no longer responding to his chemo…new lesions have shown up and because of their location far into the brain, surgery is not an option this time. There may be options, however, and my folks will know more once they meet with Dad’s doctors…we’ll just have to wait and see. Ahhhh “wait” (big sigh)! Although we remain hopeful, the reality of new cancer showing itself is heartbreaking and I ask you to lift my folks up in prayer as the next steps of their journey unfold. ‘Deeply grateful for the comfort that comes through the prayers of many!